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At 46 I was a wife, a mother of a 10-year-old and a full-time worker in a very pressurised and stressful role. Tiredness was a regular thing together with headaches, night sweats and unexplained bruises and regular urine tract infections (UTI), all of which I put down to age, stress and a busy life.
On the day of my 47th birthday, I collapsed suddenly and was taken to A&E where they ran blood tests. They found that my white blood cell (WBC) count was at 77k, substantially above the normal range of 4 – 11k. Clearly something was wrong. Further tests were to be arranged and I was to attend a meeting with a Haematologist 10 days later. My feelings during those 10 days swung from complete fear to nonchalance. By the time of the meeting, I had convinced myself it was just a random test result, a blip, caused by another UTI. But I could tell from the start of the appointment that there was something seriously wrong. And sure enough, I was told I had chronic lymphocytic leukaemia (CLL). Blood cancer. I hadn’t even heard of blood cancer before! I went into a stage called “watch and wait” which is exactly what it says – watch the results and wait for them to change.
CLL has many different mutations, some better and slower moving than others, so watch and wait can last years, even decades, for some. I had appointments every couple of months, but the WBC was rising slowly, so I hoped that I was one of the lucky ones that just lived life fairly unaffected by CLL.
Six months after diagnosis, I had a chest infection and was asked by my consultant to have bloods taken locally. The following day I received a call from the consultant telling me that watch and wait was over, and it was time to start treatment. By this time, my WBC was at 213k. I opted to join a trial called the FLAIR trial and was selected for a new novel drug that was less invasive than traditional chemotherapy. In preparation, bone marrow was taken for analysis and I began taking the oral medication.
Just three weeks into the trial, I was called in to see the consultant who most apologetically told me I was not eligible for the trial as my results showed that I had 17p and tp53 deletion, the most high risk form of CLL there is and which does not respond to chemotherapy. Whilst I had not been selected for the chemotherapy arm of the trial, I did not fit the criteria for selection. I had read a little about this strain of CLL and my only question was how long did I have to live. The consultant dismissed that immediately, telling me that he had already discussed my case with his colleagues, and I was to be put forward for a stem cell transplant.
My sister, my only sibling, had a one in four chance of being a match and was tested immediately, but sadly she was not. The next stage was to check the global database and four potential matches, all males under 26, were identified within two weeks. All were approached and asked to submit further blood samples for more in depth analysis and, within a further couple of weeks, my perfect match was found – a 21-year-old German male with a 10/10 match, same CMV status and blood group.
I had to bring my CLL under control in order for the transplant to go ahead, which was done through oral medication. This took 14 months to do and I was extremely frustrated that it was taking so long but, finally, my WBC was within the normal range and we were good to press ahead. My donor was contacted to check that he could be available to donate the cells for the desired dates and I undertook some fairly substantial tests to confirm that my heart, lungs and kidneys were healthy enough to withstand the treatment.
All results came back positive and I was admitted in July 2018 to begin conditioning treatment ready to receive my donor cells. Six days of chemotherapy and other medication ensured that my immune system was destroyed in order for the donor cells to begin rebuilding a new immune system. The six months following were tough. No energy, unable to eat much, housebound. Just walking up the stairs was exhausting. But slowly, I regained my strength and was able to do normal day to day tasks.
14 months on, I feel great, I have my life back and a future ahead of me. I’m even looking forward to getting back to work later this year. Without my selfless donor, I would have had five years at the most. Now I get to see my daughter grow up and maybe even my future grandchildren!